Monday, May 26, 2008

Birthday Boy

Well, this is several days later than I planned. For Rob's birthday, we got to celebrate by taking Lawyer/Social Advocate Boy to the hopsital for a tonsillectimy/adnoidectomy. What a way to celebrate! Now, he's back at the ER with him because Lawyer/Social Advocate Boy has not been drinking water like he told us -- he didn't lie, he just took micro-sips of water so over the course of yesterday only drank about 2 ounces when we thought he drank several cups -- and woke up bleeding from his mouth. Ugh.

Anyway, my wonderful husband turned 39 on Friday. My mom turned 75 on that day too. But she's away touring the Middle East right now, so she doesn't get a birthday blog entry. People who get to tour the Middle East don't get featured on my blog for their birthdays, because they get the special treat of going to the Middle East. Although how much of a treat that is might be debatable in some circles. I, personally, would rather go to the Middle East than be on my blog.

So, for Rob's birthday we had our traditional birthday apple pie, which totally derailed Nappy because you're supposed to have birthday cake, not pie, and she doesn't like apple pie. This is an issue for her, because really, from her perspective, all birthdays are celebrated in her honor. Now, in his honor, I will tell you a bit about my wonderful husband, Rob.

When I met Rob he was in his 20s and I was still a teenager. Scandalous! Okay, I was just shy of turning 20 and he was 23. But still. Well, this might have been scandalous, but he was so shy that I hadn't even realized that I had met him. I told him, later, it was because of the beard, the flannel shirt, and the jean jacket he always wore. Being the kind of college student that was studying classical piano, I hadn't really pondered young men who dressed like they listened to heavy metal. I kind of had my head in the clouds, or more, precisely, in a practice room at CCM, and he just kept coming around.

"Oh well," I thought, "what harm... it's not like I'm going to marry him."

Fast forward three years later, and we were married. He might have been shy, but he was persistent.

So, Rob is a very quiet, persistent guy who has a history of listening to heavy metal. He's also very intelligent. Sometimes this is good -- like it made it possible for him to finish graduate school and get a job, and, even after nearly 13 years of marriage, I still enjoy having conversations with him. Sometimes this is bad -- like when we're arguing about something. I would find that much easier if he just weren't very smart. He also likes to read philosophy, history, fantasy and the occasional geeky sci-fi or action book. Because he likes to read history he's got me hooked on historical fiction, some history non-fiction reading. I even actually read an occasional Star Trek novel.

But, no matter how persuasive he can be, he will never get me to like "Dr. Who". Some things don't even deserve to be an acquired taste.

He does still like some heavy metal, and I do have to say that he has corrupted Lawyer/Social Advocate Boy, who used to be my prized piano student but is now spending his time (while avoiding drinking water) studying electric guitar. However, he also has acquired a taste for both classical and jazz, and most recently, this interesting kind of avant guard folk music that he brought home from the library.

I realized what a gem he was when we were dating and it was winter. He lived in a house full of guys. The guys were nice, the house wasn't. It was a real slum and his room was freezing cold. There was actually no heat in the room. I lived in a pretty nice house with my roommates, and had an attic bedroom. It did get chilly, but I was whiny and complained about how cold I was. I came home from class and found his space heater plugged in and heating my room. He's been consistently that thoughtful for our entire marriage.

He also really loves Jesus. He's been willing to follow God to orphanages in Ukraine and Kazakstan and didn't run out of the room screaming when we realized we'd be working with the secret police on our last adoption. In fact, all we could both do was sit there and laugh. The first time he flew, let alone ever left the country was when we traveled to Ukraine for our first adoption. You would just have to say, too, that he's very brave.

He's also quite good looking.

In addition to all that, he has a great sense of humor. Here you can see his annual beard removal tradition:

First the "Amish Beard." He actually tried to kiss me with his beard like this! It was like being pursued by Abraham Lincoln or Dwight Shrute's brother, Mose. Freaky. We contemplated video taping him running around the yard like Mose, but thought the neighbors already find us unusual enough.

Next came the goatee.

I challenged him to keep it like this for several days, but he didn't. Next year the progression will go: full beard, full goatee, handlebar moustache.

In the course of our marriage he's completed college, graduate school, worked as a librarian, traveled, adopted children, been with me while I birthed children (didn't even get woozy!) been a great dad, helped me with advocating adoption, researched things for our family, being a computer techie kind of guy, read volumes of books to our children and has always been my best friend.

And, he does the laundry.

Not bad for a guy who once told me his motto is, "Never be in a hurry unless you're on your way to relax."

So, Happy Birthday Honey!

Monday, May 19, 2008

That Child (Known to Christ as Adam Race)

In case you haven't yet heard, there is controversy swirling around the country regarding a Catholic priest in Minnesota that has filed a restraining order against a 13-year-old boy who is severely autistic. A full article can be found here, and I find this situation troubling to say the least.

The situation is still sketchy at best. For instance, the press has not detailed what kinds of accommodations that the church has offered to the family, and the family is claiming that there were no complaints until the day that the priest showed up at their house. Obviously, something is amiss here with information.

There are some facts that weigh in on the side of the church:

1) Adam Race has severe behavioral problems, far beyond what people normally experience in a crowd.
2) Adam Race is large and can be dangerous to the people around him
3) Some of Adam's problems can probably be remedied with certain accommodations, but, in general Adam will probably always have unpredictable behavior.

However, here are some facts that weigh in against the church:

1) Adam is a child of God
2) It is NOT Adam's fault that he is severely autistic
3) Even if some of Adam's behavior is poor parenting, it is, again, not his fault.
4) While church is a public place, whether protestant or catholic, it is more than that. For crying out loud, if a church can't be inclusive then what can be?

I've read blog posts where people are trying to compare this to taking him to the movie theaters, and all I can say to that is: it is not the same, and to even compare the two shows a real lack of understanding of what the purpose of church/worship is, let alone what Christianity is.

I've read blog posts and comments where people are claiming his parents haven't parented him. To that, I would respond: it doesn't matter. Shouldn't the church be seeking even more involvement if that's the case?

I've read blog posts and comments where people are claiming that the family should just go to mass separately. To that I would say that that does nothing to help the spiritual growth of the family, or the spiritual growth of his parent's marriage. There's already enough stress on the family, should they be split for church? Shouldn't their priest be concerned with the health of their family? I also don't think the entire family should be kept from mass. That's a sure way to lose the other 5 siblings from the faith!

I've read blog posts and comments where people are stating that the parents should simply control him better. To that, I would have to say that they probably don't understand his disability.

I'm not denying that his behavior is probably out of control and intervention is necessary. I'm also not doubting that he can function better at church. However, why is the church not willing to explicitly state the "accommodations" offered to the Race family unless those accommodations were not really realistic or useful? Why has the church not addressed the issue of how Adam got the car keys to get into a car and "rev" the engine? Has the church never had an elderly person wet their pants in a pew? What about a toddler or a preschooler? For that matter, has anyone ever vomited in the church? There are signs, many signs, that the church has not attempted to create an environment or situation Adam could be successful in.

Another thing that really bothers me with this situation is how the diocese refers to him as "that child" -- there's no grace, no mercy, no sadness over the fact that they can't meet their parishioner's need. He's not Adam Race, child of God, he's "that child" -- the bad one, the one that wets his pants in the pew, the one that behaves inappropriately. They are coming off as completely blind to the fact that he's the child that his parents are trying to teach to relate to God, something that must be an enormously difficult task considering that people with autism suffer socially and, often times, relationally.

It also strikes me as wrong (and unscriptural) to involve the police and the courts with this matter, especially when, from all appearances, the church has done little to work with the family. I happen to believe that getting involved would be the very thing that Jesus would do. If the church would present themselves, specifically, as having tried all avenues possible to help Adam connect with God and help nurture his family's spiritual growth and ability to worship together, if the church had done everything they could do to ensure a safe environment (that would mean the parishioners NOT leaving keys in the car), and Adam posed a safety threat, then it might merit involving the civil authorities. But as it stands, it really looks like this priest just wanted to wash his hands of an uncomfortable parishioner.

Yet, this is just a symptom of a greater problem. Something like only 5% of the disabled population attends church on a regular basis. Why is this? Christians misunderstanding of disabilities (God made you special!) and desire to see every person with a disability healed whether they want to or not, would probably play one of the biggest roles. Lack of respect for the abilities of the disabled also plays a part. However, discrimination like we're seeing here is certainly a key component of the problem. People will say that banning him from mass doesn't mean that you're not loving him, but all I can say to that is: bull-loney!!!!! Being excluded from something for reason's beyond your control is NOT love. If you think it is, I'd prefer you'd never love me or my family!

Here, after years of believing that everyone was valuable to God -- everyone: the prostitute, the demon-possessed, the poor, the cheater, the rapist, the pornographer, the drug dealer, the doctor, the pastor, the missionary, the engineer, the teacher, the nurse, etc. we're seeing a situation where one finds that you truly can be bad enough to get kicked out of church. For the sake of many parents out there, I hope that bored little boys who attend that parish don't find out about this -- they just might have found their ticket to a more interesting Sunday morning! Be really bad in Mass and then the priest will kick you out!

In many Christian's minds, not just this one priest, there is a hierarchy, and that makes not only the disabled feel unwelcome, but the parents of children who don't behave well unwelcome too.

I mean, how bad is "too bad"? Where is it appropriate to draw the line?

Despite the horrible behavior, despite his large size and despite the fact that he can be dangerous, Adam Race was still made in the image God. Adam Race's life has the ability to reflect God's glory, even though this corrupted creation has done everything it can to hide that. How incredibly sad that "that church" is not grieving over what they couldn't do, grieving over Adam's losses, and earnestly looking for a solution that serves him and his family rather than their convenience. And how embarrassing that they felt the need to involve civil authorities on a matter that they should've been able to solve on their own.

What is so incredibly sad about this, to me, is that the Catholic Church has always been such a beacon of light regarding the sanctity of life, both of the unborn and the disabled. Why would a priest seek to snuff that light out? I hope that the righteous in the Catholic Church will stand up to this priest, and I pray that those that love Jesus will out shine this one man who simply has a completely different agenda.

Friday, May 16, 2008

Mortuss Rodents

"Mom!!!" My Princess Ballerina yelled to me, rushing in through the front door, her face flush with excitement, "You've got to come see this!"

She grabbed my hand, and started pulling me out the front door, running as fast as she could.

"It's just the cutest little thing I've ever seen!" she told me as she pulled me down my neighbor's driveway. "LOOK!"

She was pointing to a chipmunk, cute, tiny and very very dead.

"He fell asleep on Mr. Don's driveway! Isn't it cute?"

"Oh honey, he's cute, but he's not asleep.... he's dead."

"Dead?" Her eyes filled with concern. "What can we do with a dead chipmunk?"

There was not much that I wanted to do with a dead chipmunk, but I was pretty certain that there were tons of things that her brothers could do with one.

"Not much, and I think it'd be best if no one else found out about him. Let's just move his body to the woods and then he can be food for another animal. That way, he can be useful rather than if he's squished by a car on the driveway."

Or played with by some mischievous boys, I thought, but didn't say.

So, I went off to get the shovel. The other kids were inside, and I quickly snatched the shovel from the garage. I almost made it out undetected. Almost. As I was headed for the garage door, the basement door opened and out walked 3 more kids.

"Hey! What're you doing with a shovel?" Green Bottle Boy asked.

"uhhh....nothing....just moving some stuff." I replied. This was a kid who squealed with delight when we first found a dead squirrel in the backyard.

"Ohhh! My first dead squirrel!"

So, obviously, I didn't really want him to know about his "first dead chipmunk."

However, he didn't buy it and followed me out to the driveway. The cat was out of the bag, and I was okay with that, except that he noticed, right away, that the chipmunk wasn't dead. Great. It was slowly dying. Even better.

So, the 6 of them (they had a friend over) formed a semi-circle around the dying chipmunk, creating a kind of advance directive council for the dying. It was truly touching, except that the chipmunk was going to get dumped back in the woods no matter what they decided.

"We should take it to a vet." Lawyer/ Social Advocate boy said.

"Okay, I'll go get a Kroger bag to pick him up with," Said my Princess Ballerina.

"First of all, " I objected, "I'm not calling around to find a vet that treats chipmunks, and secondly I'm not willing to pay a vet that treats chipmunks."

"Let's lay hands on him and pray for him," Swimmer Girl suggested.

"AHH," I cut in, "NONE of you are touching him."

He, actually she (she rolled over on her back when I picked her up with the shovel), was really cute and it was sad. However, in the end we laid her to rest under a tree in the woods behind our house.

This was our third small animal death since living in this house. There was the infamous "first dead squirrel" and also a mole that my husband happened to stab while it was underground. Of course, the mole couldn't just die underground he had to climb out and do a dramatic heart grabbing death scene . And, of course, he waited until the next day when my husband was at work, making sure he left his bloody body out in our front yard where every kid walking home from school would see him. I swear he was just getting back at me for destroying his tunnels.

We had one small animal death years ago when we lived in the funeral home. A squirrel apparently ate some mouse poison and then climbed up into a large tree at the side of the building. I had no idea, as I passed under the branch, that there was a squirrel balancing above me, barely clinging to life. He fell down, missing me by about 1/2 a foot. I felt a bit like Chicken Little, only it was falling dead squirrels rather than falling sky.

I didn't want to dispose of him, so I left him for Rob. He didn't get around to it until dusk. He got a shovel and took the dead squirrel to the top of the hill that formed the front yard of the funeral home. Much to the joy of the guys hanging out at the bar across the street, his timing couldn't have been better. It was dark as he started digging the grave and grew darker by the minute. Suddenly, the lights, on a timer, flipped on, and there was a very defined silhouette of a guy digging a grave in the front yard of a funeral home cast all over Cheviot Road.

Since then, we've gotten wiser. We just throw them in the woods.

Monday, May 12, 2008

A Bit More Bragging

Green Bottle Boy is not just another pretty face. He can also play the piano, draw, find insects faster than a speeding bullet, and spew out dinosaur facts better than any dino encyclopedia. If I could only get him to slow down! Of course, with boys it's generally all about fast and loud, and he's no exception!

Here Swimmer Girl is showing her Christmas spirit.

Sometimes people get included on blogs just because they are really cute people.

I can't believe I have a rocker. I really can't. Not bad, though, for someone who got his guitar this past Christmas! It's really quiet because his amp is broken.

LOUD = good music. I think it's a beautiful song sung unto the Lord.

Thursday, May 8, 2008

"Struggling" to Visit Northern Michigan

The kids and I spent a great few days in Michigan last week. Part of the time we went to Grand Rapids to visit family, and during that visit spent some time at the Frederick Meijer Gardens. This is a great family spot to visit and is completely wheelchair accessible --even all of "Tree House Village"!

Something funny happened on the way out of the Gardens, though, and it reminded me how so many people view our family. A very well meaning man walked up to us. He had his infant son with him and he approached me as I was placing Nappy's chair in the back of the van.

"Excuse me," he said, hesitantly, obviously nervous, "I just wanted... to take a minute and talk to you. God told me to."

I was a bit perplexed by his statement, because I communicate with God fairly frequently, and God hadn't mentioned word one about this guy to me. I pointed out to God that it would be nice if He would let me in on these things. It's like I'm always last to know. I smiled at the guy, thinking that he might be planning to ask me about adoption. At least I was hoping he was ,because I'm always prepared to give my "Millions of Children Need Families, Yes That Would be Great if You Adopt" Sermon.

"I wanted to ask you about your daughter.... I.... is there something I can pray for? What's her ailment?"

Ailment? I thought. Was she coughing and I didn't notice? Oh no, she was sick again and I just didn't pick up on it because she never acts sick! How embarrassing!

"Is she in pain?" He continued.

"Pain?" I asked. "No, she's not in pain."

Then I realized that this was about the wheelchair, so I responded, hoping to stop the questions. I toyed with claiming she had Fetal Alcohol Syndrome and that I'm still despondent over my poor choices during pregnancy, but thought better about that.

"She just has arthrogryposis and can't walk."

"Is she terminal?"

Aren't we all? I thought, but decided not to say so I wouldn't burst his bubble. Maybe that hadn't occurred to him yet.

"Uhhh... no more than anyone else."

"Well, I just really feel like God wanted me to talk to you and let you know that she can have his blessings and healing and that she is very valuable to him. And I would really like to pray for her."

So, figuring that we can always use more prayer, I told him he was welcome to offer to pray for her and asked Nappy if he could. She looked at him, stuck her lip out and said, "NO!" (I don't think that this guy really knew what parts of her need prayer.)

So, he talked to her instead, and said, "Well, I just want you to know that God loves you. I saw you struggling this morning and I know that sometimes life can seem really hard...."

Struggling? Life can seem hard? What in the world was this guy talking about? She wasn't struggling (okay maybe a bit because we kept dumping our coats and stuff on the back of her wheelchair and making it really heavy for her to wheel, but we also pushed her alot too!).

It struck me as so odd. How could this man possibly see struggling when all I see is victory? Here is a little girl who only a year ago spent most of her day sitting and watching other kids play, unable to get herself around much, and who had absolutely no future. Now she's wheeling everywhere, trying to walk, climbing all over the place and enjoying her ability to explore the world! Here she is talking up a storm, learning her letters and counting, making jokes, and constantly pretending to be a princess or a puppy or even a duck! How could anyone look at such an animated face and think she was "struggling?"

The next day I told my friend, who has happened to live her entire life without legs, that maybe God did tell that guy to come up to us. Maybe I dropped the ball because I was supposed to explain to him that life with a disability isn't a struggle, but it's actually a celebration of one victory after another as you see God redeeming things you never thought could be redeemed and you get pictures of beauty that most of humanity will never glimpse.

She assured me that there was probably nothing I could've said that would have gotten through to that guy. As she pointed out, the burden was his, not God's. So, I guess a gracious quiet was the best response.

"Sometimes rather than healing you, God chooses to inhabit you," She said. Beautiful truth from a truly beautiful person in whom the spirit of God obviously dwells.

You have to really desire to understand the heart of God to understand which is so much much better.

Thursday, May 1, 2008

Deb Takes on Buddy LaRosa

With the great sauce, yummy mixture of cheese and unbelievable toppings, why would I want to take on an establishment as hallowed and revered, an establishment that is as much Cincinnati as Skyline Chili, you ask?

On Monday evening, our family went out to dinner to celebrate our Princess's fourth adoption anniversary. We always go out for pizza to celebrate this child's anniversary in honor of all the pizza Rob and I ate while staying for a month in Almaty, Kazakhstan. We ate, often to say the least, at the highly western Patio Pizza, which also has a franchise in both Moscow and Kyiv. Our favorite pizza was "Pizza Melanoma" , which didn't give you cancer, but was supposed to remind us of food served in Milan. So there the tradition started.

This year we settled on a family outing to LaRosa's. Our kids were very excited because the only time they ever see the inside of a restaurant is when we're traveling or celebrating someone's adoption day. Each kid picked their own individual pizza, and Green Bottle Boy was happy with his spicy sausage, banana pepper, pepperoni, jalepeno pizza. His brother was hoping to find a new roommate before the pizza hit Green Bottle Boy's digestive system. Other than that, though, we had a great time.

Towards the end Nappy proudly announced, "MOM, I need to go potty." I was thrilled that she was telling me before she went, and we happily wheeled to the bathroom, only to find that it was not handicapped accessible.

Now, it wasn't a problem for us, because I could just pick her up and set her on the toilet, leaving her wheelchair out of the restroom. However, it occurred to me that in a few years it would be a problem, and that there were thousands of my fellow citizens that this would pose a problem for.

Grant it, if you have difficulty using public restrooms, you should always go before you leave the house (which we always have our girls do), but there are times when you have to go no matter how far in advance you plan. People who use wheelchairs aren't equipped with fancier bladders than the rest of us, so there are times when you just gotta go.

Plus, as most people know, if you're going to each much of what's on LaRosa's menu, you should probably have a toilet nearby.

All this led me to wonder: aren't wheelchair users a valued customer of LaRosa's?

I called to find out, and the answer was a resounding: NO.

They claim that they are grandfathered into not needing to make the bathrooms wheelchair accessible, and if they're not legally responsible to, then they are not going to do it. That mentality says much about the priorities of the LaRosa Empire. Of course, I know that it's really shaky ground as far as the Americans With Disabilities Act goes -- they're hardly a non-profit organization, and the remodeling necessary to make a wheelchair accessible toilet would hardly tax their company. I also have to wonder what kind of legal trouble they'd get into with the health department as they are not providing adequate toilet facilities to their customers. However, I don't think the legal route is a way to fight their moral ignorance.

I believe that legal ramifications are important but there are two bigger issues here. The first is that LaRosa's doesn't care that they are discriminating against wheelchair users. However, if they put up a sign that said, "Black People May Not Use This Restroom", then all hell would break loose (as well it should). Or if they put up a sign that said, "Only People Who Speak English May Use This Restroom" there'd be protests to no end. In effect, without words, they've done the same thing to wheelchair users. They don't need to put up a sign that says they can't use the bathroom; they simply let their physical barriers do the work for them.

The other issue is the mindset of a company that professes to support our city with goodwill. The ADA passed years ago in the early 1990s, so, in the course of all these years, LaRosa's has seen fit to pour thousands of dollars into high school atheltics, but not to make their restrooms handicapped accessible. This from a company owned by a family that professes a Christian faith. It would seem that they would be more concerned with supporting the most vulnerable (those that Jesus sought after and ministered to) than throwing money away towards sports -- of course, quietly converting bathrooms for usage by wheelchair users won't get you any publicity.

So, our family has officially boycotted LaRosa's and we're asking all Cincinnatians that care a hoot about making our society truly inclusive to do the same. I realize that not every physical barrier can be removed, and I realize that there are SOME organizations that can't produce the money to make their buildings accessible, but truly, the money's there, LaRosa's just doesn't want to bother. They're banking on the fact that people will buy their pizza no matter what. They're believing that Cincinnatians care more about garlic crust, philly steak calzones and supporting outstanding athletes than about living in a city that values each individual.

When we entered LaRosa's, my husband told our little Swimmer Girl, "Maybe someday your photo will be up here with the other high school athletes."

But the truth is that Swimmer Girl has got far too much dignity to ever allow her photo to grace the walls of an establishment that won't let her sister use their toilet.